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Post by Tracy on Nov 21, 2003 17:17:55 GMT -5
Hey there my name is Tracy. I have a now 2 yr old (be 3 in Feb ) with a chromosome 2q 37.1 deletion. She didn't start walking til she was 22 months. She is either a little slow or stubborn with her talking.
Casey ( the daughter ) was diagnosised at around a year and a half. There was no other genetic problems in the family at the time. She spent a year off and on in the hospital. When we make it to the end of Nov. We will be one year hospital free.
I am totally anxious for this site to get up and running full force.
I welcome any and all email.
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Post by Stephanie on Nov 22, 2003 1:18:29 GMT -5
Hey there my name is Tracy. I have a now 2 yr old (be 3 in Feb ) with a chromosome 2q 37.1 deletion. She didn't start walking til she was 22 months. She is either a little slow or stubborn with her talking. Casey ( the daughter ) was diagnosised at around a year and a half. There was no other genetic problems in the family at the time. She spent a year off and on in the hospital. When we make it to the end of Nov. We will be one year hospital free. I am totally anxious for this site to get up and running full force. I welcome any and all email. Tracy it is nice to have you. Please join the board so that we will all have your email address and contact info. The website is up and running now and the link is posted on the board. I hope you enjoy! |
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Post by leonberol on Dec 12, 2003 0:46:51 GMT -5
My son Leon was also diagnosed when he was about 18 mo. We knew something was not right at less than a year, since he didn't roll over or started to crawl. He finally started walking at 22 mo and it was a relieve for everyone when he became mobile!
Speech is also slow for him. He will be 3,5 years soon and for a while he had a couple words but lost them again and he is just starting to try again. He can sign "more", but is not very consistant, or should I say his parents aren't??!
Hopefully school will help, he has speech therapy there every day.
They are thinking of starting him on Pecs. Ute
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Post by Steph on Dec 22, 2003 2:10:02 GMT -5
Has anyone tried to teach sign? I have not had much success with Kane learning it. Just curious if anyone else has had any luck?
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Wendy Mom to Elly del 2q373
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Post by Wendy Mom to Elly del 2q373 on Jan 1, 2004 3:15:48 GMT -5
Yes, we are teaching Elly sign language. We are teaching Signed Exact English, incorporating words like "the" and "and", and using signs in the exact order that English is spoken in. Elly is 23 months old, and has very little oral language, (and a trache, which makes life a little difficult) but has been wildly successful with the sign. She JUST started stringing two signs together yesterday. She signs dog, yes, up, more, help, good, no, book, toy, play, silly, I love you, my, mine, you, and the equivalent of "gimme-that-right-now-darnit". Additionally, she has begun signing specifically for Cheerios and eat. Mind you, we have language regression. She said Mama at about 14 months, and then lost it again until about 21 months. Somedays, she couldn't sign to save her skin. Somedays, she has no receptive language at all. And her expressive language goes on the blink. Those are the days that she has sensory problems, too. You know, if her position changes by a millimeter she has a tantrum which lasts 4 hours and involves banging her head on the hardest thing she can identify. Hope this helps....Wendy
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pickle
New Member
Hey everyone! Thanks for stopping. Contact me with any questions or comments about my son.
Posts: 1
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Post by pickle on Jul 20, 2004 21:02:37 GMT -5
hi. I have just figured this messgae board out and came across your question of anyone trying to teach sign. I learn it at my school I teach at and I am teaching it to my son who is six. He is very vocal but only says mama. He has learned several (maybe 10) signs in this past year alone. I keep them simple and sometimes have to change them to something he can do. Let me know if I can help. Rebecca
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Post by Racheal on Oct 9, 2006 23:28:28 GMT -5
I hope this list is still active, My name is Racheal I just had twins in May and my daughter Beth was suspected of a chromosome abnormality before she was born and subsequantly was diagnosed as having a 2q37.1 terminal deletion de nova.
I was just really finding this list so informative over what sorts of things we could be aware of and look out for when I saw no-one had posted for a while.
Our daughter Beth has a hypoplastic right heart with pulmonary and tricuspic artresia she is currently awaiting her 2nd surgery. She also has some noticable low muscle tone and hypoplastic fingers and toes (some of them dont fully straighten) but otherwise she is a cheerful talkative little baby she loves listening to the sounds she can make as she cant hear all outward sounds she is limited to 60 decibels (normal speaking voice)where as normal hearing allows us to hear 20 decibels. I am so amazed and thankful for todays technology that detects such things so early. She also has an unusual head shape which is being looked into and she may need to wear a corrective helmet though she does not tolerate hats very well so it should make life interesting.
do people still post here have you moved elsewhere?
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Post by Racheal on Oct 10, 2006 0:49:35 GMT -5
I just wanted to add a few more things to my previous post my daughter beth does have feeding problems mainly with sucking so she is mainly fed through a naso gastric tube. But she is slowly starting solids and is taking to it quite well. She was a low birth weight baby and gains weight very slowly on fortified breastmilk, not sure as yet how much of it is because of her heart and how much because of her genetic makeup. I think thats about all up to date her eyesite is being monitored but as yet no problems have presented themselves there.
Regards
Racheal
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